The holidays are pretty rough this year. It's hard not to think of last year and other
years when it was all joy without the dark cloud of cancer hanging over our heads.
Had a drs. appt. Friday. The doc wants to do another bone marrow biopsy. Tim's
M-spike and proteins are staying stable since his SCT but his red and white blood cells
are not recovering like they should. He feels terrific and none of us has had even a
cold. This is some sort of divine intervention, I'm sure, because we have never had a
school year come this far without our daughter and myself becoming sick at least once
by now. Depending on how the BMB comes out, they may give him another bag of his
stem cells to see if that will help him produce more blood cells. They say it's a good sign
that his platelets are in normal range and staying there but of course I worry when the
doctors are puzzled and things aren't going as they should. Hopefully the fact that he
feels so good is also indicative that this is nothing too serious. Anyway, I wish all of you
and your families a joyful holiday season. I hope 2008 holds blessings for all of us.
Sunday, December 16, 2007
Sunday, November 25, 2007
Decisions....
It is now over 2 and 1/2 months since Tim's SCT. He feels back to normal except that he is
still having some skin issues. Nothing too serious but he still itches. The second round of labs
stayed stable. Our doc is not pushing the full ablative allo so much but still pushing a mini allo
and wanted to start Velcade right away. We stalled and went to our second opinion doc in NYC.
He saw no reason to rush to treat if he remains stable but he also felt allo was the way to go if
Tim wants any chance of a long term outcome. He feels the best he would do on meds is 2 to 3
years and he may stay stable from the transplant for up to 2 years but stressed that was a
"best case scenerio." That makes the total about 4 to 5 years. I see people on the ACOR myeloma listserv.
who go many more years than the docs. told them they would and they were dx'ed before we
had Revlimid and Velcade. We see the transplant doc. this week but I already know what she
will say. Our hosp. is very pro transplant and everyone seems to think we are nuts not to do
it if he has a match. For right now, we are trying to get through the holidays without new meds
(and new side effects). Tim has a gut-wrenching decision to make and educating ourselves is
only so useful. Doctors are split on allo transplants and we are confused and afraid. We are going
to try to push this all out of our minds enough to try to enjoy the holidays.
still having some skin issues. Nothing too serious but he still itches. The second round of labs
stayed stable. Our doc is not pushing the full ablative allo so much but still pushing a mini allo
and wanted to start Velcade right away. We stalled and went to our second opinion doc in NYC.
He saw no reason to rush to treat if he remains stable but he also felt allo was the way to go if
Tim wants any chance of a long term outcome. He feels the best he would do on meds is 2 to 3
years and he may stay stable from the transplant for up to 2 years but stressed that was a
"best case scenerio." That makes the total about 4 to 5 years. I see people on the ACOR myeloma listserv.
who go many more years than the docs. told them they would and they were dx'ed before we
had Revlimid and Velcade. We see the transplant doc. this week but I already know what she
will say. Our hosp. is very pro transplant and everyone seems to think we are nuts not to do
it if he has a match. For right now, we are trying to get through the holidays without new meds
(and new side effects). Tim has a gut-wrenching decision to make and educating ourselves is
only so useful. Doctors are split on allo transplants and we are confused and afraid. We are going
to try to push this all out of our minds enough to try to enjoy the holidays.
Sunday, October 21, 2007
Making each day count
This weekend is a month since Tim and I got home from his SCT. I can't believe this man
just had this procedure done 6 weeks ago. Yesterday, we went to a great mini-golf place
with our daughter and then to a garden center for a pony ride. Today we drove to several
fall festivals,one in west Jersey, the other in Warwick,NY and my husband was hiking all
over a corn maze and walking all day long. I was trailing along looking for
a place to sit down and he was fine. I asked him how he stays so happy and he told me"It's a
beautiful day, I'm with my family, what am I going to do? Mope." He amazes me everyday.
Words live brave and courageous don't even come close to describing the strength and resolve Tim has shown these last months. He refuses to let MM define him. We try now to
get any chores or errands done while our daughter is in school and do all fun things with her
when she is not. We're getting into that "live for today" groove.
just had this procedure done 6 weeks ago. Yesterday, we went to a great mini-golf place
with our daughter and then to a garden center for a pony ride. Today we drove to several
fall festivals,one in west Jersey, the other in Warwick,NY and my husband was hiking all
over a corn maze and walking all day long. I was trailing along looking for
a place to sit down and he was fine. I asked him how he stays so happy and he told me"It's a
beautiful day, I'm with my family, what am I going to do? Mope." He amazes me everyday.
Words live brave and courageous don't even come close to describing the strength and resolve Tim has shown these last months. He refuses to let MM define him. We try now to
get any chores or errands done while our daughter is in school and do all fun things with her
when she is not. We're getting into that "live for today" groove.
Wednesday, October 17, 2007
Still catching up
So cut to July 2007. They are preparing Tim for an auto transplant.
It takes forever. There are literally hundreds of patients waiting for
transplants in this hospital. We have a lymphoma doctor who is
world-renowned who works with our doc. and they've got people
flying in from all over the world. Tim has his pre-transplant work-up,
gets a catheter implanted on 7/30 and starts CDEP as an out-patient
for 4 days in our home. The home care nurse who handles this is the tops.
Then it's neupogen shots and aphoresis which began on 8/13. He takes
5 full days to collect just shy of their goal but it's good enough. They get
extra to freeze for possible later use. We had originally thought that Tim's transplant would take place in summer. Instead he goes in on our daughter's second day of school(9/6). We stay in an apartment just 2 blocks from the hosp. The back and forth is rough when you are "sea-sick" and anemic and there's a time or two he has to wheelchair it. He
gets to the cancer clinic everyday about 8 or 9 am and stays till 4 or 5
pm. Things go OK. Of course it's no picnic but we feel grateful that it's
not as bad as some people have had it and the 6 months of anticipation
can really build this process up in your mind. It was hard being away from our daughter but I am able to get home a few times when he gets
over the worst of it and we get through the 2 weeks. We get home on 9/20. He is still weak and nauseous but it's good to be home at last.
Last week, we got the results of his first round of blood tests. We are just
devastated. It looks like it did not work. We will know more with the next round of tests but either way, our doc. warns us that it did not work as
it should have and we are not going to be in the group of patients who
get a remission from auto transplants. They planned to do another in
3 to 4 months or a "mini-allo" with his sister's cells if Tim decided to do that. They were strongly urging him to do the mini-allo. Now Tim may not
be a candidate for that process either. The doc. tells us that we may be looking at a full ablative allo transplant as our best option and only option for a possible cure.So, this is where we are now. We have an appt.
in NYC with a top myeloma center in Nov. after we get his 2nd round of
blood tests back. Our doc. did say that sometimes numbers don't fall right away but I get the feeling he is not holding his breath. I made that
appt. in NYC as a second opinion. I feel we just can't make a decision like this without it. I think our doc. is aggressive. Aside from MM, my husband is in great physical shape and I think they want to throw the big guns at him thinking he can take it. This may be a good idea, then again
maybe not. It's hard to do something that can very likely cause your death for a long shot of a cure and meanwhile there may be drugs that
may control myeloma or cure it in the near future. I would welcome any
comments from folks. I learn so much from other patients. We are trying
to make an educated decision and the MM scenerio is changing so fast,
it's hard to keep up.
It takes forever. There are literally hundreds of patients waiting for
transplants in this hospital. We have a lymphoma doctor who is
world-renowned who works with our doc. and they've got people
flying in from all over the world. Tim has his pre-transplant work-up,
gets a catheter implanted on 7/30 and starts CDEP as an out-patient
for 4 days in our home. The home care nurse who handles this is the tops.
Then it's neupogen shots and aphoresis which began on 8/13. He takes
5 full days to collect just shy of their goal but it's good enough. They get
extra to freeze for possible later use. We had originally thought that Tim's transplant would take place in summer. Instead he goes in on our daughter's second day of school(9/6). We stay in an apartment just 2 blocks from the hosp. The back and forth is rough when you are "sea-sick" and anemic and there's a time or two he has to wheelchair it. He
gets to the cancer clinic everyday about 8 or 9 am and stays till 4 or 5
pm. Things go OK. Of course it's no picnic but we feel grateful that it's
not as bad as some people have had it and the 6 months of anticipation
can really build this process up in your mind. It was hard being away from our daughter but I am able to get home a few times when he gets
over the worst of it and we get through the 2 weeks. We get home on 9/20. He is still weak and nauseous but it's good to be home at last.
Last week, we got the results of his first round of blood tests. We are just
devastated. It looks like it did not work. We will know more with the next round of tests but either way, our doc. warns us that it did not work as
it should have and we are not going to be in the group of patients who
get a remission from auto transplants. They planned to do another in
3 to 4 months or a "mini-allo" with his sister's cells if Tim decided to do that. They were strongly urging him to do the mini-allo. Now Tim may not
be a candidate for that process either. The doc. tells us that we may be looking at a full ablative allo transplant as our best option and only option for a possible cure.So, this is where we are now. We have an appt.
in NYC with a top myeloma center in Nov. after we get his 2nd round of
blood tests back. Our doc. did say that sometimes numbers don't fall right away but I get the feeling he is not holding his breath. I made that
appt. in NYC as a second opinion. I feel we just can't make a decision like this without it. I think our doc. is aggressive. Aside from MM, my husband is in great physical shape and I think they want to throw the big guns at him thinking he can take it. This may be a good idea, then again
maybe not. It's hard to do something that can very likely cause your death for a long shot of a cure and meanwhile there may be drugs that
may control myeloma or cure it in the near future. I would welcome any
comments from folks. I learn so much from other patients. We are trying
to make an educated decision and the MM scenerio is changing so fast,
it's hard to keep up.
Time to find a doctor
So we start to research doctors. As luck would have it(guess we have to
be grateful for the little things) we find a top doc. at a hosp. just 20 minutes from our house. He specializes in MM and was at the Arkansas
hospital for a number of years. Everyone we asked said "he's the man."
The hosp. is also one of the top 50 hospitals in the country. There's got
to be some upside to living in striking distance of where the terrorists
like to hit. We've got good doctors. After our first appt., Tim is put on
Revlimid and pulse Dex(4 days on, 4 days off) as well as tons of prophelactic meds to ward off the bad bugs that much Dex could make
you vulnerable to. Results were very good. IGG fell almost in half.
He was taken off pulse Dex and put on 1x per week when new study showed too many people dying from high dose Dex. Stayed on Rev.
and continued to do very well.
be grateful for the little things) we find a top doc. at a hosp. just 20 minutes from our house. He specializes in MM and was at the Arkansas
hospital for a number of years. Everyone we asked said "he's the man."
The hosp. is also one of the top 50 hospitals in the country. There's got
to be some upside to living in striking distance of where the terrorists
like to hit. We've got good doctors. After our first appt., Tim is put on
Revlimid and pulse Dex(4 days on, 4 days off) as well as tons of prophelactic meds to ward off the bad bugs that much Dex could make
you vulnerable to. Results were very good. IGG fell almost in half.
He was taken off pulse Dex and put on 1x per week when new study showed too many people dying from high dose Dex. Stayed on Rev.
and continued to do very well.
beware:beginner blogger
So I'm a computer challanged stay-at-home mom who would
probably be better off if my 9-year-old were home from school
to help me with this but here goes anyway. My husband and best
friend, Tim, was diagnosed with MM on March 8,2007. I thought
he had strep throat, turned out he had strep sepsis and that was the
GOOD news. Three days later they tell us the news. I had found out
they were checking for this and told Tim so he was not blindsided
but I was also told that people don't usually get it this young so I
was hopeful. Tim had just turned 43. And so this journey began,
ready or not. Before I spend all morning catching up to the present,
I guess I better post this and see if I set up this blog right in the first place. Stay tuned.
probably be better off if my 9-year-old were home from school
to help me with this but here goes anyway. My husband and best
friend, Tim, was diagnosed with MM on March 8,2007. I thought
he had strep throat, turned out he had strep sepsis and that was the
GOOD news. Three days later they tell us the news. I had found out
they were checking for this and told Tim so he was not blindsided
but I was also told that people don't usually get it this young so I
was hopeful. Tim had just turned 43. And so this journey began,
ready or not. Before I spend all morning catching up to the present,
I guess I better post this and see if I set up this blog right in the first place. Stay tuned.
Subscribe to:
Posts (Atom)
